Columns The MS Wire - A Column by Ed Tobias MS news notes: 10-minute Ocrevus injection, NfL blood test, optic nerve MS news notes: 10-minute Ocrevus injection, NfL blood test, optic nerve Columnist Ed Tobias comments on the week's top MS news by Ed Tobias | July 18, 2023 Share this article: Share article via email Copy article link Editor’s note: “MS News Notes” will return to its regular Monday morning schedule next week. Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening: A 10-minute injection of Ocrevus Would you like to be treated with Ocrevus (ocrelizumab), a high-efficacy disease-modifying therapy, without receiving it during a lengthy infusion? According to the MS News Today story “Positive results found for new under-the-skin Ocrevus formulation,” that possibility may happen soon. Early results from a Phase 3 clinical trial showed that a 10-minute subcutaneous injection of Ocrevus was comparable to the lengthy intravenous infusion in reducing brain lesions, as shown on an MRI three months post-treatment. The IV version requires four to six hours of treatment, twice a year. The 10-minute under-the-skin version being tested also requires treatment twice a year. Now, I’m not a scientist, so I have to ask: If the Phase 3 tests only looked at MRIs after three months, and the new medication requires the same six-month dosing frequency as the current one, shouldn’t the efficacy of the two have been compared at six months, rather than at three? What am I missing here? Recommended Reading June 30, 2023 News by Steve Bryson, PhD Newly discovered genetic variant tied to faster MS progression A blood test that might predict MS progression A study reported in the story “NfL blood levels may help predict long-term progression of MS: Study” concludes that measuring neurofilament light chain (NfL) levels in the blood might predict long-term disability in people with MS — even if those people aren’t having acute relapses or showing signs of disease activity. NfL is a protein that’s released when nerves are damaged. Since MS damages nerves, it seems logical that a high NfL level could indicate that the illness is progressing, even if no symptoms are evident. If a test can show that my disease is progressing, even if it’s not apparent to me or on an MRI, I think that’s a very good thing. If, based on that test, my neurologist might switch me to a more effective treatment before additional damage is done, that seems even better. This isn’t the first such report, by the way. Back in 2018, MS News Today published a story about NfL as a possible prognostic tool. And things have advanced to the point where, a year ago, Labcorp announced an NfL blood test in the U.S. The company says doctors can use it to screen for neurodegenerative diseases such as MS. Adding an eye test to MS diagnostic criteria The McDonald criteria are a set of guidelines used by neurologists as a gold standard to diagnose MS. They include an evaluation of MRI results, a history of relapses, and sometimes a spinal tap. The criteria have never included eye damage, but as reported in “Research supports inclusion of optic nerve in McDonald criteria for MS,” there’s probably good reason to add it. The research discussed in this story recommends measuring the thickness of the retina, which these scientists call “a window to the brain.” Optic neuritis, or damage to the optic nerve, is the first symptom of MS reported by about 1 in 4 people, according to these researchers. I’ve seen a lot of anecdotal confirmation of this on MS social media sites. Although I’ve never experienced optic neuritis, before I was diagnosed in 1980, I was given an optical coherence tomography exam to look for it. So my neurologist must have believed that viewing the optic nerve was worthwhile. The latest MS News Today story about this notes that the test is “easy, noninvasive, and inexpensive.” When the McDonald criteria were last revised in 2017, it was argued that there wasn’t enough evidence to justify including an examination of the optic nerve. The scientists who conducted this most recent study think they’ve presented enough evidence now to prompt a change of mind when the next revision is written. I hope they’re right. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags MS News Comments Tom A. Hello Ed- I’ll comment on the O infusion vs injection. I’ve done both procedures. Here are a few considerations and observations: One of the problems with Betaseron, an every other day subcutaneous DMT (now regarded as low efficacy), for many was the PIA of injections. Notice how it was seldom used as a comparable in research; they always used once a week Avonex as a comparable (which was significantly less interferon and easier [in my opinion] to have a superior comparable result in research). It was more predictable that people would do a once a week shot rather than every other day, for research sake. I did my Betaseron like clockwork, for 20+ years and “apparently” had good results. “Apparently” in quotes because we never really can prove anything; there are so many factors going into your own personal outcome. Anyway, people don’t like needles and doing it themselves. I think there is new research on that too.. But perhaps they like “infusion day” even less? I’d say, and you and I both know, one has to get used to the MS roller-coaster; that two periods a year of predictable uncomfortableness (it wasn’t uncomfortable for me) that goes away pretty quickly, is nothing in comparison to the potential bad roller coaster ride of MS that never goes away. Either way you go, infusion vs. injection, is bound to be nothing in comparison to that bad roller coaster ride. (So get on a DMT.) The other thing I think about with a twice or four time a year injection, is, “don’t screw it up”!. You have a lot riding on a single injection done correctly and I’d rather have it done infusion style via a pro in a hospital setting. For those reading, my notes are based on many years MS Men’s support group, reading social media posts and reading many, many, many research articles. I’m 65, no longer on any DMT, my MS is now considered non-active SPMS. I didn’t have any rebounds when stopping either Betaseron or Ocrevus. But don’t get me wrong, MS totally changed my life. But I get by and I’m “OK” about it. I guess flexibility and open-mindedness were as important for me as all the medical stuff. Kind of hard to forget you have MS when you do a shot every other day. And I suspect that is what most people want, to forget about it. Sorry for all the bla, bla, bla. Thought it might be helpful. Reply Ed Tobias Hi Tom, It's always a pleasure to read your comments, which should be useful to many here. Wow, 20 years of self-injecting! I didn't last 7 with Avonex. I even got to where my wife had to inject me because I couldn't do it any more. But, Avonex is IM, so a MUCH bigger needle. And that was back in the late 1990s, before there were spring-loaded injectors. Of my 4 DMTs - Avonex, Tysabri, Aubagio and Lemtrada - I was most comfortable with my monthly Tysabri infusions. They only took an hour and I could work or doze (I preferred to doze) while in the chair. I think all of the DMTs helped, in one way or another, but as you say "we can never really prove anything." BTW, my column this Friday will be on that new research about pills far outdistancing injections and infusions as the first treatment being ordered...and a few thoughts I have about that. Ed Reply Tom A. Yes, the wife was very helpful injecting the sites that were hard for me to reach! (You need lots of sites, at 15 a month). Reply Ed Tobias Tom - I didn't need that many spots...just one leg or the other. It helped that my wife was a physical therapist. Reply Eileen F. Quote "Now, I’m not a scientist, so I have to ask: If the Phase 3 tests only looked at MRIs after three months, and the new medication requires the same six-month dosing frequency as the current one, shouldn’t the efficacy of the two have been compared at six months, rather than at three? What am I missing here?: Agree here, I have PPMS and this is the only choice I have, but the 10 min treatment will not work for me as I always get severe reaction. For those thinking about it, personally, I will not do it because of the severe implications and side effects of Ocrevus! Reply Ed Tobias Hi Eileen, Thanks for your comments. Choice of treatment is a very personal thing. I have SPMS and several years ago, at age 68 and after being treated with three other DMTs, I chose Lemtrada. I felt the possible benefits outweighed the possible side effects and it was the right choice for me. I hope you can find a treatment that will be right for you. Ed Reply Annmarie Passaro I'm 43 had MS since year 2000 right now taking mavenclad 10mg have secondary MS and unexplained nausea get twice monthly don't know if from MS? Praying mavenclad works it's new meds for me also praying for cure for MS wants next course after secondary MS worried. Reply Ed Tobias Hi Annmarie, I'm not a doctor and I don't want to speculate on the cause of your nausea. I hope that you have told your neurologist about it. I do hope that the Mavenclad works well for you. I have had MS for 42 years and I have been secondary progressive for about half that time. I have used four DMTs and I think the most effective for me were Tysabri and Lemtrada. Best of luck to you. Ed Reply Mickey lien I started o In march and have seen fantastic results, I’m still not 100% where I was before this last relapse and wondering how come I only get the infusion twice a year? Wouldn’t 3 times be better? Reply Ed Tobias That's great, Mickey. I can't answer why it was decided that twice-a-year would be the protocol for Ocrevus but it's a good question to ask your neurologist. Good luck with your treatments. Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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